Update so long overdue…

I have neglected this site. Well, I’ve been in Venice. And Italy. Only for 2 weeks, but I like to say, “I just went to Paris”. Anyway, it shows how well I am doing, that I’ve even went. Though I have no idea if it’s the worms.

Since I’ve neglected writing, there has been a lot going on in the worm world. TSO trials have begun for Crohn’s disease in the United States and abroad. Helminth therapy is being discussed all over the press, from Moises Velasquez’s book An Epidemic of Absence, to news articles from CBS to Science, all about the potential benefits of being infected with worms.

And what about me and my worms? I don’t know if I’m even hosting hookworms. I still need to do an egg count, and see if any of the 8 I dosed with are still alive. I don’t know how much sub Q IG is helping on its own; (I switched from IVig to subQ IG, which means subcutaneous Immune Globulins, which I do a dose of 50 g weekly. ) It seems to help. The pyoderma around the stoma has never come back. The Crohn’s? I’m not really sure how much inflammation I have since I’m overdue for a test. I need to do a colprotectin stool sample and take blood CRP and SED measurements. From how my gut feels, I suspect some low grade inflammation both in my ileal-cecal area and the rectum, since I have periodic burny pain in the former and too much mucus coming from the latter. Though the mucus is also dependant on my sweet consumption; more honey and sugar equals more mucus, when I cut back, it also recedes. Though I don’t seem to have the willpower to keep to the right diet for long.

I am 175 pounds, however. I need to start exercising more because I can’t say it is all muscle. On the one hand, it is nice to have a little extra fat for once in my adult life, and I am enjoy having breasts and thighs, but my belly is getting to be too much, and my arms are starting to look bad. I know it is from eating too many carbohydrates, and if I could just stick to a paleo diet I would return to about 165 pounds and stay there, depending on how much I exercise. But I guess a testament to how well I’m doing is my reluctance to be fully strict with diet. In other words, I’m mostly getting away with it. And REALLY enjoying food.

The colostomy is probably helping me to maintain relative remission, because of the constant inflammation I had in the rectum and multiple bowel movements before that; it was harder to reach a consistent level of health. But I also hate it, it leaks sometimes and I can’t control it. I have no idea when I’m going to have gas or a bowel movement, I can be caught in the worst places (most recently, on the 1.5 hour bus ride preceding the 2.5 hour train ride back from Siena to Venice, in which the seal completely failed, and I had shit coming down my underwear, into my pants, smelling terribly so that I would get up and move down the train after every fart With not enough wipes to clean myself, stuck in a tiny train bathroom, Italians knocking to get in, I cursed that colostomy. But I survived, made it back to my apartment in Venice, walked the streets of Paris, Venice, and Siena with strength and unending curiousity, feeling a sense of sadness for not being whole, but enjoying the hell out of it. I was there. I was well enough. And I drank lots and lots of wine.

In two weeks I go down to reinfect with 10 more hookworms in Mexico. National Geographic TV wants to film me. I’m not sure what to think. One might ask why I keep doing this if I don’t even know if the worms are in there. That maybe I’m just chasing something that I think is helping, when in actuality, I’m some desperate individual hooked on getting infected with a microscopic parasite. But as the avalanche of studies and news articles pour in about the connection between a loss of commensals and the growing tide of autoimmunity, heart disease, cancer, depression, the list of ailments is going on so long, I can’t even remember them all, it makes you want to do everything you can to prevent the modern ills of society. And I don’t know if the worms are going to effect my Crohn’s, or if the IG is pulling all the weight, or the turmeric supplements, or the diet that I try to follow. And at this point I’m trying not to care so much. I’d rather go to Italy. I’d rather drink “un demi-litro” of wine, and forget my troubles for a while. I know that when the worms are working, my skin is clearer, I can get away with eating more non-species appropriate food. I can go on and on with energy to push myself more than the average woman. Or maybe I just think the worms are doing this, and then it’s the power of the placebo to keep my health above water, so I’m not always sinking from average to below average, or god forbid, the dreaded flare up from hell.

Maybe the worms are doing nothing, but preventing me from getting cancer, or heart disease, or Parkinson’s, like my mother. I’ve learned not to rely on them 100%, however, that diet, and exercise, and meditation, and friendships are just as important, and it’s the daily habits that add up to the lifetime of disease, or hopefully, health.

I’ll update the science, the links, the data from my bloodtests. I’ll let you know what the worms do in 2 weeks, if I get another high from them, or diarrhea, or nothing. Who knows?

I still want to get rid of this damn colostomy, but until my next colonoscopy, I’m trying to enjoy my life, develop my pedicab business, plant the winter garden, paint my house, homeschool my children, refinance my properties, get all of my friends to move onto the block, and hopefully, start painting again like the masters I saw in the Musee d’Orsey. Play more music with people. Drink more cappucinos and wine. Walk for hours, smoke more, love more, and try to forget for a moment, this monster called Crohn’s that I should never had to experience in my life, and maybe, just maybe, my dream of going to Italy without a bag, without a disease, without a constant fear of what is quietly destroying myself inside quiets down to a dull, then silent whisper.

Maybe one day I can imagine myself well. And then they can invent a pill that makes you forget all that you suffered from before. So that when I look down at all of my abdominal scars, I can wonder what tree branch I caught myself on when I stumbled in that forest of abandon. Or maybe I tripped on a cobblestone and scraped myself on a gondola as I fell drunkenly into the canal.

I am trying HDC again (rat tapeworms). Went on Stelara in December, which is helping maybe 5%. Probably going off of it in July, when I’ll try IVig again. Did about 20 fecal transplants, without much benefit. Trying a low carbohydrate diet right now which is helping. Always experimenting…